Morphological Remission!

We finally have some good news, in fact, some GREAT news. Ellie has achieved morphological remission!
 
Morphological remission is achieved when there is no trace of leukaemia blasts within a small sample of bone marrow containing around 20 cells after a manual count. This was conducted last week and we were informed that Ellie had technically achieved morphological remission on 19 March. Additionally, one of the benefits of enrolling in the MyeChild Trial is that we gain access to Minimal Residual Disease (MRD) testing. This is the newest technology, which although has been around for a number of years, has not been readily available for AML patients. MRD testing takes a sample of 100,000 cells and definitively determines the presence of leukaemia blasts. During this testing, there was no presence of leukaemia in Ellie’s sample. There were less than 5% blasts in her bone marrow sample (normal rate for healthy people) and none were cancerous. We received the results of MRD testing on 24 March and it means that chemotherapy treatment has worked and has eradicated the cancer!
 
This is fantastic news, and the best possible news we could hope for at this critical milestone. However, for clarity, Ellie is not yet cured of cancer and she is not yet in Complete Remission. There is a long way to go in her treatment and she must complete the full four cycles of chemotherapy over the six-month(+) period. MRD testing will be conducted a number of times during her treatment to confirm eradication of the leukaemia. To meet the requirements of Complete Remission, there are a number of other complex factors including CNS, specific analysis of blasts, neutrophil and platelet count requirements, and time-based factors. These will be determined much later and after Ellie’s treatment is complete.
 
This information comes as a big sigh of relief because the last 7 weeks has been very tough on Ellie. Even in the context of Leukaemia, Ellie has had a very rough time. She has been so sick – the sickest child on the ward from what we have seen (but also the only AML patient). While the nurses have not used those words, it is clear to us when speaking with them in the last week or so, that they were really, very concerned about Ellie’s response to treatment. For around five solid weeks she was constantly febrile, constantly nauseated, vomiting a dozen times daily, had a horrendous angry rash from neck to toe (unknown cause), zero counts on neutrophils, platelets, and white cells, and required blood transfusions every other day. We were never certain what the bottom of the trough in terms of toxicity would look like. Every time there was a new complication, we thought she had found the bottom, only to go deeper. She eventually found the bottom of that trough and then sat there for a long time until her lungs began failing and she was admitted to the ICU for 3 days. However, after stabilising in ICU, she started to bounce back, her rash subsided, her neutrophils and platelets began regenerating, and her mood and energy levels climbed.
 
Ellie bounced back so well that she was released from hospital on Sunday 21 March for 5 hours and was allowed to come home, disconnected from her central-line medications (a benefit of living so close to the hospital). Those 5 hours were so good for her morale and mental health (and ours). When we returned to the hospital, her blood counts continued to improve. Due to her improving condition and while we waited for the MRD results to return, our team of doctors made the unexpected decision that she could come home for 7-9 days until we were ready to commence phase 2 of chemotherapy. This took us all by surprise however, the doctors felt it was safe for her to be home (but so close to the hospital) and the mental health benefits outweighed the risks. Ellie has been home since 22 March and we expect she will remain home until 31 March when we commence phase 2 of chemotherapy. In the 72 hours since being home, her condition has improved considerably. She is eating, drinking, talking, laughing, playing, and doing school work – almost none of which, has been achievable in the last 6 weeks. It has been so wonderful having the whole family in the house at the same time, again, something that has not been possible for the last 6 weeks, with one parent staying with Ellie in the hospital at any given time.
 
At this point in Ellie’s treatment, it is impossible to tell whether some of the critical decisions we made in the first 72 hours were the right decisions – particularly regarding enrolling in the MyeChild Trial. This is something we think about every day. Has Ellie achieved morphological remission because of the Gemtuzumab trial drug? Would Ellie have achieved morphological remission without Gemtuzumab? Will the inclusion of Gemtuzumab mean that Ellie will remain in remission and achieve Complete Remission? Will it prevent her from relapsing or needing a bone marrow transplant? Could Complete Remission be achieved without Gemtuzumab? Was the length and depth of toxicity affected by our decision to treat Ellie with Gemtuzumab? Was her toxicity trough so deep because of our decision? Would her lungs have failed and would she have been admitted to ICU if she wasn’t treated with Gemtuzumab? Was the inclusion of Gemtuzumab unnecessary given her Inv(16) AML subset, thus unnecessarily exposing her to increased toxicity and increasing the risk of long term problems in her lungs, heart, and kidneys, which struggled the most during phase 1? We will never know the answer to many of these questions, however I’m confident our decisions were well-informed and were the best decisions to be made at the time; we just hope they were the right decisions and will lead to a good long term prognosis and Ellie’s enduring good health.
 
PC